There is Good Work Happening in Paediatric Heart Care

When I was diagnosed with end-stage heart failure in August 2016, in the weeks leading up to my heart transplant on October 11 and in the many months since, I have contemplated how I may ensure that other South Africans, particularly people in poverty-stricken rural areas and especially young children, have the opportunity for life that I have been given?

I understand that the focus of our country’s health policy today is on primary healthcare of the entire population, as opposed to the narrow scope of the apartheid-era. But it is difficult to simply accept willy-nilly that there is no place for tertiary healthcare alongside the essential primary health programmes. It does not have to be an either-or situation.

During my journey over the past year, I have had extensive discussions with healthcare professionals in the public and private sectors.

I have raised questions with the Ministry and Department of Health. I have communicated with doctors in the Christiaan Barnard division of cardiothoracic surgery at the University of Cape Town and Groote Schuur, trying to understand their work and asking questions about what they do or don’t do to take further a vision for heart disease treatment in our country.

I spent a fascinating morning with Professor Rik de Decker, paediatric cardiologist and director of the cardiac catherization laboratory at the University of Cape Town and Red Cross War Memorial Children’s Hospital, until recently the only specialised children’s hospital in sub-Saharan Africa.

I have spoken to non-governmental organisations and business people. I have observed paediatric cardiac clinics at Frere Hospital (East London) and Cecilia Makiwana Hospital (Mdantsane) in Buffalo City Metropolitan Municipality in the Eastern Cape.

Some of what I have heard and experienced has made me extremely angry at our government’s abject uselessness to properly address the growing cardiac disease pandemic, the effect of which is that (especially) poor, rural children are needlessly dying from congenital (since birth) heart disease that could and should be treated.

I have also listened to parents’ stories of their child being very ill as a result of structural heart defects and being healed by what has become relatively run-of-the-mill open-heart surgeries or catherization laboratory interventions. These stories have included testimonials in support of dedicated doctors, nurses and administrators at the coalface of treatment.

And then I met 13-year-old Unakho, who has the most unimaginably broken heart but, amazingly gutsy and energetic, the self-styled “Queen of Hearts” would much rather work to bring a smile to the faces of other young cardiac patients than be confined to a sick bed.

I can admit that I have wept at these stories. And that my appraisal of State efforts is more nuanced than when I started out asking questions. Make no mistake, I will still call out the useless, perhaps even captured, bureaucrats. But, much decent work is happening in the public sector, as there is in private hospitals. Of course, we can always do more, and better.